Full Text of SB1761 97th General Assembly
SB1761eng 97TH GENERAL ASSEMBLY |
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| 1 | | AN ACT concerning public health.
| 2 | | Be it enacted by the People of the State of Illinois,
| 3 | | represented in the General Assembly:
| 4 | | Section 5. The Newborn Metabolic Screening Act is amended | 5 | | by changing Section 2 as follows:
| 6 | | (410 ILCS 240/2) (from Ch. 111 1/2, par. 4904)
| 7 | | Sec. 2. The Department of Public Health shall administer | 8 | | the
provisions of this Act and shall:
| 9 | | (a) Institute and carry on an intensive educational program | 10 | | among
physicians, hospitals, public health nurses and the | 11 | | public concerning
the diseases phenylketonuria, | 12 | | hypothyroidism, galactosemia and other
metabolic diseases. | 13 | | This
educational program shall include information about the | 14 | | nature of the
diseases and examinations for the detection of | 15 | | the diseases in early
infancy in order that measures may be | 16 | | taken to prevent the mental
retardation resulting from the | 17 | | diseases.
| 18 | | (a-5) Beginning July 1, 2002, provide all newborns
with | 19 | | expanded screening tests for the presence of genetic, | 20 | | endocrine, or
other metabolic disorders, including | 21 | | phenylketonuria, galactosemia,
hypothyroidism, congenital | 22 | | adrenal hyperplasia, biotinidase deficiency,
and sickling | 23 | | disorders, as well as other amino acid disorders, organic
acid |
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| 1 | | disorders, fatty acid oxidation disorders, and other | 2 | | abnormalities
detectable through the use of a tandem mass | 3 | | spectrometer. If by July 1,
2002, the Department is unable to | 4 | | provide expanded screening using the
State Laboratory, it shall | 5 | | temporarily provide such screening
through an accredited | 6 | | laboratory selected by the Department until the
Department has | 7 | | the capacity to provide screening through the State
Laboratory. | 8 | | If expanded screening is provided on a temporary basis
through | 9 | | an accredited laboratory, the Department shall substitute the | 10 | | fee
charged by the accredited laboratory, plus a 5% surcharge | 11 | | for
documentation and handling, for the fee authorized in | 12 | | subsection (e) of
this Section.
| 13 | | (a-6) In accordance with the timetable specified in this | 14 | | subsection, provide all newborns with expanded screening tests | 15 | | for the presence of certain Lysosomal Storage Disorders known | 16 | | as Krabbe, Pompe, Gaucher, Fabry, and Niemann-Pick. The testing | 17 | | shall begin within 6 months following the occurrence of all of | 18 | | the following: | 19 | | (i) the registration with the federal Food and Drug | 20 | | Administration of the necessary reagents; | 21 | | (ii) the availability of the necessary reagents from | 22 | | the Centers for Disease Control and Prevention; | 23 | | (iii) the availability of quality assurance testing | 24 | | methodology for these processes; and | 25 | | (iv) the acquisition and installment by the Department | 26 | | of the equipment necessary to implement the expanded |
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| 1 | | screening tests. | 2 | | It is the goal of this amendatory Act of the 95th General | 3 | | Assembly that the expanded screening for the specified | 4 | | Lysosomal Storage Disorders begins within 3 years after the | 5 | | effective date of this Act. The Department is authorized to | 6 | | implement an additional fee for the screening prior to | 7 | | beginning the testing in order to accumulate the resources for | 8 | | start-up and other costs associated with implementation of the | 9 | | screening and thereafter to support the costs associated with | 10 | | screening and follow-up programs for the specified Lysosomal | 11 | | Storage Disorders.
| 12 | | (a-10) Beginning 90 days after the effective date of this | 13 | | amendatory Act of the 97th General Assembly, provide newborns | 14 | | with expanded screening tests for the presence of | 15 | | Mucopolysaccharidosis I (Hurler disease) and | 16 | | Mucopolysaccharidosis II (Hunter's disease). | 17 | | (a-15) Beginning 180 days after the effective date of this | 18 | | amendatory Act of the 97th General Assembly, provide all | 19 | | newborns with expanded screening tests for the presence of | 20 | | Severe Combined Immunodeficiency Syndrome (SCIDS). If the | 21 | | Department is unable to provide expanded screening for SCIDS | 22 | | using the State Laboratory within 180 days after the effective | 23 | | date of this amendatory Act, then it shall temporarily provide | 24 | | the screening through an accredited laboratory selected by the | 25 | | Department until the Department has the capacity to provide | 26 | | screening through the State Laboratory. If expanded screening |
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| 1 | | is provided on a temporary basis through an accredited | 2 | | laboratory, then the Department shall substitute the fee | 3 | | charged by the accredited laboratory, plus a 5% surcharge for | 4 | | documentation and handling, for the fee authorized in | 5 | | subsection (e) of this Section. | 6 | | (b) Maintain a registry of cases including information of | 7 | | importance
for the purpose of follow-up services to prevent | 8 | | mental retardation.
| 9 | | (c) Supply the necessary metabolic treatment formulas
| 10 | | where practicable for
diagnosed cases of amino acid metabolism | 11 | | disorders, including phenylketonuria, organic acid disorders, | 12 | | and fatty acid oxidation disorders for as long as medically | 13 | | indicated, when the product is
not available through other | 14 | | State agencies.
| 15 | | (d) Arrange for or provide public health nursing, nutrition | 16 | | and
social services and clinical consultation as indicated.
| 17 | | (e) Require that all specimens collected pursuant to this | 18 | | Act or the rules
and regulations promulgated hereunder be | 19 | | submitted for testing to the nearest
Department of Public | 20 | | Health laboratory designated to perform such tests.
The | 21 | | Department may develop a reasonable fee structure and may levy | 22 | | fees
according to such structure to cover the cost of providing | 23 | | this testing
service. Fees collected from the provision of this | 24 | | testing service shall
be placed in a special fund in the State | 25 | | Treasury, hereafter known as the
Metabolic Screening and | 26 | | Treatment Fund. Other State and federal funds for
expenses |
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| 1 | | related to metabolic screening, follow-up and treatment | 2 | | programs
may also be placed in such Fund. Moneys shall be | 3 | | appropriated from such
Fund to the Department of Public Health | 4 | | solely for the purposes of providing
metabolic screening, | 5 | | follow-up and treatment programs. Nothing in this
Act shall be | 6 | | construed to prohibit any licensed medical facility from
| 7 | | collecting
additional specimens for testing for metabolic or | 8 | | neonatal diseases or any
other diseases or conditions, as it | 9 | | deems fit. Any person
violating the provisions of this | 10 | | subsection (e) is guilty of a petty offense.
| 11 | | (Source: P.A. 95-695, eff. 11-5-07.)
| 12 | | Section 99. Effective date. This Act takes effect upon | 13 | | becoming law.
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